Death, Dying, and Agency
My mom died in 2017. This is how it went down and what I learned in the process.
[Warning: contains medical kerfufflery and a lot of talk about death and dying, in case that wasn’t clear.]
It may be a controversial opinion, but I truly am in favor of assisted suicide under certain circumstances. If the person knows that their illness has no effective treatment, or that the treatment is likely to greatly diminish their quality of life, they may choose to avoid treatment altogether.
If they are able to give informed consent, they should be allowed to choose to die. By that, I mean they should be given the option alongside the menu of other traditional choices, such as chemotherapy, radiation, surgery, amputation, and so on. Complementary therapies should be available as well.
This is not what happened in the case of my mom. We found out there were masses, and 28 days later, she died.
By the time we found out that she had lung cancer, it had metastasized to her liver and spine. Toxins that would normally be filtered out by the liver had reached her brain, causing encephalopathy, a dementia-like condition. There was no question that her mental state was compromised. Exactly what she could and could not understand was unknown, but suffice to say, informed consent was a total non-starter at this stage.
We were informed that, even if it had been caught earlier, she probably would have died around the same time. In my grief, however, I felt that she deserved better. I’ve never been that angry at any one human being, the way I was when it came to her primary care doctor.
It wasn’t his fault that she got cancer. But in the two years she saw him an average of two or three times a month, for over two years. I can’t prove it, but I’m fairly certain he assumed she was a hypochondriac.
The really silly and irksome part of the whole thing was how easy it would have been to order imaging the first time she complained of shortness of breath and unexplained pain. Or on any of the first ten times she told him.
And so on.
During the quiet moments, I had some time to think on this. My anger at the doctor was about his failure to take her complaints seriously, but it wasn’t just that she was clearly on the road to death that ate away at me.
It was the fact that she didn’t get to have a say in her health and how she spent the time leading up to end of her life that really got me. Philosophically, I felt that she had been robbed of that, when it would have been so easy for things to have gone differently.
She deserved better. She deserved to choose for herself how she left this world. That was what I found unforgivable, more than anything else.
I came to realize, in the course of these 28 days, that I would have moved heaven and earth to help her. If she chose to have treatment, I would have held her hand. If she had chosen suicide, I would have done whatever needed to be done to facilitate that. And I wouldn’t have felt guilty about it.
I wouldn’t have enjoyed it, either, by any stretch. But if she had asked me to help her, I would have risen to the occasion. I felt that I owed her that much. Despite how hateful she could be towards me at times, I felt that she deserved to have her wishes heard and respected.
Instead, her brain was turning to Swiss cheese. She could hardly swallow anything. I was told to put thickener into her food and drink, but she didn’t like it and wouldn’t eat or drink anything if I did.
I remember her not being able to walk from her bedroom to the front door. Screaming in the ambulance because she couldn’t understand where she was or who the people around her were. Later, she begged me for water. Begged me. All I could do was let her suck on a damp sponge on a stick.
I had never seen anything like it, and nothing could have prepared me for it. Nothing could prepare anyone for it, I would suppose.
She had been robbed of any agency or control over what was happening to her, and she was incapable of understanding the situation. And there was nothing I could do to make it better.
The one silver lining on this very dark cloud is that she didn’t have to live through the pandemic. I don’t think she could have handled it. She would worry endlessly about me, my brother, and our dad (her husband of over 30 years) catching COVID-19, driving herself insane over it.
In the end, it happened pretty fast. I like to think she’s in the afterlife, no longer in pain. Technically, she died of thirst, which led to heart failure. To be honest, there was a feeling of relief when she passed, for her and for myself. Not happiness or anything approaching it. Just relief.
Her fight was over. I got the sense, in some ways, that mine was just beginning.
